A cancer diagnosis can be abrupt, alarming and have a devastating impact on patients and their loved ones.
When patients are diagnosed, it is often accompanied by a plan. Their GP will give them information about their cancer and support services, send them for further testing, and write a referral to a specialist.
But what if the cancer is so rare that standard treatment does not yet exist?
When other cancers usually have a specific medical team or specialist, what happens when there doesn’t seem to be a designated expert for this type of cancer?
It’s a terrifying position to be in as a patient, and one that many Australians with rare, less common and complex cancers face every day.
Here are some other common examples of the challenges people living with rare cancers face.
Inequity in survival outcomes
Approximately 40,000 Australians are diagnosed with a rare or less common cancer each year. Some 16,000 people lose their lives – that’s 69 people each day. While about one quarter of cancer diagnoses in Australia are rare or less common, they cause a third of all cancer deaths. Although five-year survival rates are improving, there is greater progress in common cancers, which now have an overall five-year survival rate of 79%, compared to just 43% for less common cancers and 63% for rare cancers.
Late diagnosis, unclear prognosis
No screening programs exist to detect rare cancers early, so they are often complicated by a late diagnosis – making the cancer more difficult to treat. It can also be very difficult for doctors to estimate a prognosis because there is so little data available to inform their judgement.
Exorbitant costs
Many patients are paying huge out of pocket costs for treatments that are not funded by the Government – sometimes tens of thousands of dollars. Some people are travelling overseas for treatments and are forced to crowdfund. Tragically, more patients are choosing to forgo treatment altogether rather than bankrupt their families for life-extending treatments.
Limited information
Typically, people living with rare cancer have gone without support resources tailored explicitly to their needs. Instead, they have had to rely on information designed for common cancers, or sometimes nothing at all. They often need to undertake extensive personal research to find the answers they need.
Less expert knowledge
There isn’t as much research to rely on as evidence is still being established, and there are fewer experts who specialise in rare cancers. This can make it difficult for doctors to quickly find everything they need to care for people with rare cancers.
Limited treatment options
Treatment planning is notoriously difficult. Compared to more common cancers, fewer clinical trials and limited data to support drug registration and reimbursement means rare and less common cancer patients are left with fewer proven treatment options and fewer subsidised medicines.
Delayed access to medications
The timeframe to get treatments to patients in Australia is lengthening. At present, it takes at least 14 months for a new drug to be approved and subsidised. This is of particular concern for cancer patients with advanced disease, who may only have a short time to live.
Limited rural and remote services
In rural and remote areas of Australia, some services may not be available at all. As most cancer treatment centres and experts are based in metro areas, many people living outside of major cities need to travel, often at significant expense, spending extended time away from their jobs, support systems and families.
Focus on common cancers
There has been rapid progress in treatment options and survival rates for common cancers thanks to increased screening, surveillance and improved treatments. At the same time, a consistently higher number of people with a rare, less common or complex cancers are dying from their disease.
RCA Specialist Cancer Navigators share what it’s like to pick up the phone every day to Australians who are out of options, and in need of hope.
How these issues affect all Australians
As cancer research continues to progress, we can now find out very specific information about each person’s individual cancer (known as your genomic profile). Instead of having ‘lung cancer’, for example, you may now find out the specific subtype of lung cancer you have, such as EGFR non-small cell lung cancer.
With an estimated 151,000 new cancer cases diagnosed annually, almost every Australian will be impacted by cancer at some stage in their life, whether it be through their own experience, or that of a close family member or friend. And as more and more rare subtypes of common cancers are being identified every day, you are increasingly likely to personally know someone with a rare cancer.
Our healthcare system and Pharmaceutical Benefits Scheme (PBS) are not designed to consistently deliver solutions for people with rare cancers. This is why we must all work to better support these Australians, and help drive change in access, affordability, and quality of care.
What we are doing about it
We support patients with rare, less common and complex cancers by:
Providing 360-degree personalised support
We provide each patient with access to their own Specialist Cancer Navigator for personalised clinical, emotional, financial and practical support throughout their diagnosis, treatment and beyond.
With specific expertise in the challenges a rare cancer journey can bring, our Specialist Cancer Navigators tailor their support to exactly what matters to the patient, no matter how complex.
Examples include helping patients to navigate the health system, access specialists and treatment, connect with services, and fundraising. Often, it includes just being there to listen and understand.
Learn more about how we support patients.
Driving change in access, affordability, and quality of care
We bring people together to influence meaningful policy change with immediate impacts, improving access to the best care, treatment, and technologies for the patients of today and tomorrow.
Examples include advocating for research, better access to clinical trials, faster access to funded therapies, and patient participation in decision making. It also includes putting forward recommendations, such as in the Rights and Roles of Australian Cancer Patients Report, the Vision 20-30 Report and the Rural Care Travel Plan and creating solutions like the RCA Patient Handbook and the MAP (Medicines Access Portal).
Learn more about Our Impact.
How you can help
There are several ways you can get involved to help support Australians living with rare, less common and complex cancers.